Megan McNeil 1990-2011

The odds were against Megan McNeil even leaving the hospital when she was first diagnosed with adrenal cancer at the age of 16. Megan, however, wasn’t going to go without a fight, and fight she did, not just for herself but for the hundreds of scared kids she’d met in the childhood cancer wards and the thousands she’d never meet face to face.

But they knew her. Because she wrote the childhood cancer anthem that got them through dark, lonely nights in hospital measuring the time by the clicks and beeps of the machines attached to their small bodies.

Childhood cancer is not for the faint of heart. It destroys whole families. It robs them of everything they were and thought they would become. It puts lives on hold, crushes careers and finances, and robs them of each other.

Most marriages fail and the rate of siblings suicide is staggeringly high.

Amidst all that despair was Megan’s voice, pure and honest, and a song that gave families battling childhood cancer hope. Because when your kid is fighting for life, hope is in rare supply and high demand. It is what gets you through the next appointment, the next heartbreaking decision, the fear, and even the loss.

Megs was fearless. She made a bucket list and crossed everything off she could, including bungee jumping, ziplining and parachuting.

And she told her story over and over again to the tens of millions of people who got to know her through stories done on her by media outlets around the world.

Everyone loved her. Because she was generous, real, and just as concerned about other kids on the childhood cancer journey as she was about herself.

Her story was named one of the best of 2010 by Canada AM and the most inspirational story of the year by CBC’s Connect with Mark Kelley. But none of that ever went to her head. And she worked to get her message out, even when she hurt, was tired from the treatment or just plain wanted to pull the covers over her head and forget she had cancer.

She did it because she had a mission. And a belief that we would one day soon live in a world where children didn’t die from childhood cancer. A world where:

soon, enough money would be pumped into the woefully underfunded field of childhood cancer research;

drug companies would realize that while there are no profits to be made in curing childhood cancer, saving whole families from the despair of childhood cancer is profitable in other ways and;

bureaucrats in Canada would have the courage to say childhood cancer deserves its own month in Canada the way it has in the States.

She believed and the world wanted to believe along with her.

And now that Megan McNeil has died, it will fall to other desperately ill children and their families to try and raise the money they need for life saving research. It will fall on other small, frail shoulders to push the government for Childhood Cancer Awareness Month in Canada (it exists in the US but not Canada) and to beg drug companies to invest in research that will likely not make them a profit.

10,000 Canadian childhood cancer families, inspired by Megan’s courage, have no choice but to pick up where she left off and fight for the lives of their kids.

Our hearts ache for her parents, Dave and Suzanne, who stood at her side because that’s what good parents do. What kind of strength does it take to support your daughter when her biggest goal is to grow up?It takes the strength of a Megan McNeil. And we know where she got it from.

Comments

The first thing I can say is … you get it … you understand the ravages of childhood cancer which, to some degree, is comforting to a parent of a child diagnosed far too long ago. Most who have never walked in our shoes don’t understand. You certainly do.

I know that Diana has sent you some blogs that I will be writing for The James Fund for Neuroblastoma Research. Ironically the topic of the third blog was guilt, the guilt a parent of a survivor feels when their child has survived but many others haven’t. It’s not irrational but a real guilt and then there’s the feelings of guilt for feeling guilty that your child has survived. Another the guilt you feel when your talking to a bereaved family and feel that you’re flaunting your childs survival in the bereaved families face.

I just finished writing that when I saw the posting on facebook that Megan had died. That guilt struck me again …

Later in the day I attended a volunteer appreciation supper and was speaking to a long term survivor who spoke of his guilt, something I hadn’t considered when I wrote my piece but just as real if not more than my guilt.

Childhood cancer is unlike anything else and you describe the effects on the family so well. Thank you for understanding and helping us raise awareness of the ugliness and brutality of childhood cancer. At times they might look like cute little bald-headed kids but childhood cancer treatment is anything but cute.

Dave, the courage that you and so many of the other families I have met battling childhood cancer truly inspires us. And Megan totally rocked our world. It was our honour and privilege to work along side her and to call her our friend. Thank you for the kind words.